The Invisible -vs- Visible Aspects OF COPD
COPD, much like asthma, is an invisible illness. It involves inhaling invisible substances that cause invisible changes to occur inside lungs, and sometimes cause invisible symptoms. This invisible nature can make it difficult to gain the support of people who aren’t living with it, causing us to have to explain ourselves over and over again.
Yes! This can be frustrating. So, to help explain what it’s like living with COPD, I thought it would be neat to contrast the visible aspects of COPD with the invisible.
Let us use a character named Bob.
You cannot see the 5,000 plus chemicals in the cigarette smoke in the air at his work. Nor can you see the chemicals in the air at the factory where he works. These chemicals are inhaled day after day, and they may cause changes to occur inside Bob’s body that contributes to a disease called COPD. As this is gradually happening day after day after day, you can see nothing.
You can see Bob going about his life. You can see him getting up in the morning as most others do. You can see him brushing his teeth, combing his hair, and going to work. You can see him working. You can see him playing with his kids, or working on his hobby, which so happens to be making things out of wood. He enjoys working with wood, and he enjoys making others happy by making things for them.
As his lung disease gradually progresses, he starts to feel increasingly short of breath. His symptoms are silent at this point, meaning no one but him knows they are present. He feels short of breath, but you cannot see any signs to indicate this is happening. He feels some chest tightness, but you cannot see chest tightness. He worries, but you cannot see worry. He wonders why he is short of breath, although he usually chalks it up as just a cold. So this kind of eases his mind, and he forgets about it for a while.
One day, Bob’s symptoms get worse. He is having a COPD flare-up. His words come in short choppy sentences. As he walks he leans on things to breathe and constantly takes breaks. His chest heavily heaves up and down as he breathes. It’s quite obvious that he needs to seek help. You may take him to the emergency room, and see the doctors, nurses and respiratory therapists helping Bob. Soon, you see that he is breathing easier.
Bob is a humble man who just wants to get back to the normal routine that is his life. But he finds this is difficult. He finds when he works he has to take breaks with increased frequency. After work, he yearns to make things for his kids, but he finds that he has to slow himself down often to catch his breath. He usually tries not to let others see him struggle. He has an inhaler prescription now, and when he feels he needs it, he goes into hiding around a corner or in the bathroom.
You see that he is taking many days off of work. Sometimes he comes home from work early. He rarely finishes projects in his garage, even projects he has promised you he would complete. Sometimes you wonder if he is sick, but you also can’t help but think he is just being lazy.
Bob is not lazy. He just wants to be a normal guy. He wants to go about his normal routine. But, he is gradually realizing that he has to make changes. He doesn’t complain about his breathing, even though he may be a little short of breath even on good COPD days. He struggles with the changes he has to make, such as seeing doctors more often, taking medicine, and avoiding cigarette smoke and the chemicals at his work. He may even feel sad.
Bob starts to see doctors with increased frequency. Bob may seek your help. He may ask you to drive him to his appointments. He may ask for your support. Since you do not have COPD, and even though you saw him have a severe flare-up earlier, he may have to remind you what it’s like. This is no knock on you. It’s normal if you do not have COPD, to forget what it’s like. So, Bob may have to remind you. He may say things like, ”I am having trouble breathing,” or “I need you to call for help.” Even though Bob looks normal to you, he needs your support now more than ever.
What to make of this?
Bob’s goal is to live a normal, functioning life with COPD. He sees his doctors as often as he needs to, he takes his medicine as instructed by his doctors, and he does his best to avoid his COPD triggers. Making it so much easier to adjust to his new life with COPD is support from his family and friends. They understand, that even though Bob might look normal, that he may still be experiencing the invisible aspects of COPD.
Do you have an exacerbation toolkit?